I have been on Gilenya for 2 years and recently been diagnosed with breast cancer, I am concerned there may be a link, just wondered if anyone else who us on gilenya has also been diagnosed with breast cancer. My BC consultant phoned my Neurologist who said I should stop taking it with immediate effect, however I am waiting for an appointment to discuss what I should for my MS now. Thanks in advance for any responses.
From my understanding, all the DMTs increase your risk of getting cancer - a horrible fact. You have all my sympathy. My sister was diagnosed with breast cancer a few days before Christmas and it has been a very worrying and distressing time for her and the family. She’s now recovering after having a mastectomy.
Like I said, any DMT will increase your risk of getting cancer. If you want more information, you might search the Barts MS Blogspot, where there’s quite a lot of stuff about cancer, MS and DMTs.
Here’s a relevant quote from the Blogspot
“Please note that one of the functions of the immune system is to fight malignancies and when you suppress the immune system you get a higher incidence of secondary malignancies; these tend to come on many years later and predominated by lymphomas and skin cancers.”
That’s actually from
So sorry to read your news.
Has a plan of action been decided yet?
Thinking of you.
Sorry, I have no relevant experience to share, but wanted to sympathise. What rotten stinking luck. As if MS wasn’t enough. I wasn’t aware that DMDs gave you a higher risk of cancers. I suppose it makes some sense. But all the same it’s lousy.
I hope you find some further MS medication as well as dealing with the cancer. Hopefully it’ll be treated and resolved.
Thank you so much for your kind messages. I will have a read of the attachment thanks.
Still waiting to hear from my Neurologist so no plan as yet, although I feel very nervous about having any further medication after this.
Thanks again everyone x
The link I posted is probably not the most informative paper on the site (it was just the one with a telling quote). You might want to look at some of those I’ve listed below. I need to warn you that the picture is complicated. In general, people with MS (not on DMTs) are thought to have a lower risk of cancer than the general population. However, there was a study in Taiwan suggesting breast cancer risk was higher for women with MS than those without. And the doctors think, as I said above, that DMTs may increase risk, although not breast cancer risk is not particularly mentioned in this.
Here are the relevant links:
I have been diagnosed with breast cancer and have started treatment. Iam not taking any DMD so I guess it was just a case that my number came up. I am struggling toi cope with both the MS and the demands of the treatment. I don’t feel that my care is joined up. I have had to make decisions such as not having nodes removed as I am trying to minimise the risk of lymphoedema. The cancer is in my right breast and that is my far stronger side so I rely almost wholly on using my right arm to get up turn over etc.The oncologist doesn’t seem to understand or support this decision because it doesn’t conform with NICE guidance. However they just don’t understand that I cannot del with MS, cancer and lymphoedema.I am also funding it very hard to sleep after the surgery as to reduce the neuropathic pain I suffer with I always sleep face down lying over a pillows. Clearly now I have had surgery I can;t do that for a while at least. I can’t get my GPO to do anything practical to help, so feel very alone in dealing with the cancer and the MS. It was all made worse when I fracture a bone in my ankle in a fall. I am hoping nothing else can go wrong. There must be other people going through a similar experience and I wondered if they had any advice or stories of hiw they found the support and understanding they needed during the cancer treatment process.
Good luck to you all. Sending hugs Anne x
Hello to you all, I was diagnosed with ms 8 years ago and have only ever taken ldn and did not start on dmd’s.
I was diagnosed with breast cancer in July, had a lumpectomy in August and then a month of radiotherapy. I will also take tamoxifen for 10 years.
It was a very dark period of my life but things are slowly but surely getting back to normal.
I seen my neurologist on Monday and he wants me to have an mri of brain,neck and spine just to see what has gone on as I had my first ever relapse in July just before my cancer op.
The neurologist does not think I will start dmd’s as with the treatment to stop the cancer it may not be compatible, if that makes sense.
I see my oncologist on Wed and will ask all the questions then.
Hope things settle for all and I will keep you all in my thoughts. Mary
I have been on Gilenya since late 2011 and was diagnosed with breast cancer in June 2012 and again in August 2018. I’m trying to find out if there’s a connection and talk to other people who have been diagnosed with breast cancer while taking Gilenya.
Mumfirst I’m so sorry to hear about your diagnosis. I was on Gilenya for four years until I was diagnosed with stage 3 triple negative breast cancer. I had a lumpectomy all lymph nodes removed and chemo and radiotherapy. It was hard going. I now have lymphodema in my affected side following a fall and an extremely nasty bruise. It appears to be controlled at the moment. I appear to have been very lucky that my neurologist and oncologist keep in touch by letter. I stopped my DMDs so that I could commence chemo and then went back on Gilenya after finishing chemo. There is not thought to be a link between Gilenya and breast cancer but my understanding is that if you’re on immunosuppressant medication it’s more likely. I also recently read a report recently that suggested you’re more likely to get breast ca if you have ms but not sure how accurate that is. Don’t hesitate to message me if you ever need anyone to chat to etc. Good luck with the treatment xx Also you can’t be on DMDs while having chemo. You’ll have to be off them for at least 6 weeks. Also get a port put in as saves your veins xx